The Decision.

Hi. After my last post about fizzing and buzzing with all over pins and needles I thought I'd update. I've decided, off my own back, to come off Methotrexate. I have been on it for 19 months and have already tried Sulfasalazine and Hydroxichloraqine. Sulfa gave me swellings on neck and ears and a very itchy all over purple rash and Hydroxy was fine but didn't do much at all.

Injectable MTX has been brilliant for my joints - either that or RA has just upped and left (well it's always worth hoping a bit).

This will be the second time I've come off it. Last time was just for a month in March/ April to see if it was causing the awful taste I was suffering and give me a break from the nausea. I found that after 3 weeks the pain and swelling came roaring back in my right arm - shoulder, elbow, wrist and knuckles and I was splinted and dosed up with Naproxen for nearly 3 weeks. Back on the Metoject and off it went - and despite reducing doses twice the pain has never returned. The bad taste went away finally when I reached 12.5mg 7 weeks ago and no pain or swelling still.

But then the pins and needles arrived. And these are just defeating me now - they are everywhere and I'm getting beside myself with worry about it - scratching myself madly all the time although it's all subcutaneous so there's no rash and cream doesn't help at all.

I went to see a young, newly qualified GP today to see if they could tell me whether MTX induced neuropathy causes long term damage to the nervous system. She couldn't tell me either way because it is so rare - and said she would try and research and talk to my other GPs who are both off this week. I felt a bit bad because I must have been the patient every GP dreads, let alone one who has only been qualified for a week! She looked at all my blood results and said she agreed with my usual GPs - the culprit had to be the Methotrexate there is no other explanation. I sat there scratching and rubbing and must have looked like a complete nutcase :roll:

Came home and decided to google Methotrexate and neuropathy - which is listed as a very rare side effect along with bad taste. An NHS cancer drug page flashed up and it said that this kind of neuropathy can cause lasting damage for some but goes away after chemo treatment is finished for others. I know I'm on a far lower dose than any chemo patient would be but I've also been taking it for much longer.

That's when I make a decision. I just can't subject my body to any more of this. I know it's very rare but so was the awful taste and that wasn't in my head. And swelling of neck with Sulfa was very rare but somehow I landed that too?

I wonder if RA has ever upped and left for anyone - I know it's very unlikely but I currently have no swollen joints and no pain. If the RA was still active this wouldn't be such a hard decision and I would have qualified for anti-tnfs. But even RA isn't worth risking damaging the nervous system for I feel.

So that's my decision - no more sharps bin or Metoject for me. If the pins and needles continue to get worse like this I'm going to be demanding an MRI and a referral to a neurologist. If the RA comes back there's always Naproxen and Hydroxichloraquine again (never understood why they took me off it anyway!).

Sorry for long rant - I'm feeling so emotional as I fizz and burn - but I just had to get all this off my chest.